Charity Suffereth Long and Is Kind

With all the stress and worry and difficulty of last week, we would have been much worse off if not for some help that we received.

On Monday evening of last week I got a text from my brother that lives just a few hours away, offering to help. Then his wonderful wife sent a text saying that she didn't work the next day and that they could be at the hospital/house in three hours. At that point I had only slept for two and a half hours during the last two days, so I said yes. They drove two cars up; Leah came to the hospital and held Topher so I could sleep and Jordan came to the house to help Bryan. They were an answer to prayer.

After transporting the girls to and from dance and doing the bedtime routine so Bryan could come to the hospital, Leah drove home Tuesday night. Jordan stayed and worked remotely for the next two days. In the early hours of Wednesday morning I learned that my brother Isaac and his fantastic wife Falisha had offered to fly out from California to help. They would arrive on Thursday and Friday. That meant I just needed to get through another few days flying solo at the hospital.

Later that morning, after the sun was up, a friend from church texted and asked if she could come hold Topher so I could sleep. This was shortly after I had started pumping and was feeling a little frantic about taking care of both of us. I said yes. I did the same when four other friends made the same offer. These marvelous women came and held my baby and kept me company and made it possible for me to sleep. I don't know how I would have handled everything without these sweet ladies from church.

Isaac and Falisha have been a great help, first at home so Bryan could come to the hospital, then to me and Topher when Bryan was home with the other kids, and finally in taking care of all of us when we were home again but exhausted. They've both gotten sick while here, but continued to help anyway. They will go home today and we will miss them so much.

Our family has been blessed by so many people through these hard weeks, those that came and gave their time and those that prayed and checked on us from afar. These are the best Valentine's Day gifts we could have hoped for.

She Missed Him

Recovery

We have spent the last two days resting. Topher is still tired but so much better than he was. Sophie and Peter are both on antibiotics for double ear infections and sinus infections (plus bronchitis and pink eye for Sophie) and have more energy.

I'm still recovering from my week of very little sleep. Last night I slept for nine hours. Nine hours! It's a good indication about my level of exhaustion that I was tired again by mid-day.

Hooray for rest!

There's No Place Like It

He is home! On Saturday morning we were told that Topher was well enough to move from the PICU to the regular pediatric floor. The nurses removed the oxygen help that had been taped to his face for a week and monitored his vital stats for the night. Then, on Sunday morning, the doctor told us he looked really good and we were going home.

We are all so happy to be here.

Upswing

It was a good day. His air flow on Wednesday was all the way up to 23. Right at this moment it's at 8. That was the magic number to let him try nursing again. While the doctors were discussing if it was time to switch back, the tape on the feeding tube came loose and the tube fell out on its own. So he's nursing again! He's also playing and giggling and laughing and smiling, for short stretches in between long rests.

Shortly before he lost the feeding tube.

Hands Like Lightning

Today's excitement: Topher having enough energy to rip out his feeding tube and then getting a new one put in.

In the Right Direction

I only have a minute to write this. I've been pumping every two hours, so my time has been limited.

Topher started the day in bad shape. 

Yesterday

When the nurse came in this morning she commented that something else was going on and she thought he needed an antibiotic. She told the doctor her impressions and he agreed. He said they expected him to be getting better at that point rather than worse, so maybe there was a secondary infection. I had had the same feeling for at least a day. They gave him the antibiotic soon after.

Throughout the day he began to improve, little by little.

By bedtime he had enough energy to go back to trying to pull off the sock protecting the IV and removing the feeding tube. He's still on high flow oxygen, the feeding tube, and the IV, but he has a little twinkle in his eye too.

Thank you so much for all the texts and emails and comments. We have felt your love and your prayers. Topher's name was put on the prayer roll in at least five Temples, all because of you wonderful friends and family. Thanks you, thank you, thank you!

Tonight, with enough energy to play and turn himself sideways in the crib.

Hard

Today has been hard. We thought he was perking up yesterday and last night, but then this morning his breathing got worse and his fever came back. He hasn't had energy to stand or play or laugh or even sit up. His oxygen level is great, an improvement from Sunday, but his respiratory rate is way too high and his heart rate has gotten high too.

The doctors said he could keep nursing, as long as it didn't interfere with his breathing treatments. After his long hard day, that decision was reversed. He now has a feeding tube in his nose. I'll pump instead of nursing him and they'll use that supply in the tube. Hearing that I wouldn't be able to nurse him was really hard. And then watching (or rather listening since my eyes were closed but I was in the same room) them insert the tube into his nose as he cried finally unlocked the flood of emotions I had so tightly kept inside.

This is hard.

And scary.

Before the feeding tube.

Not Quite a Limo Ride

What we thought was croup turns out to be RSV. Last night Topher and I visited the ER of a local hospital, took a ride in an ambulance at 3:00AM, then made ourselves comfortable in the PICU of a different hospital. And we may be here the rest of the week.

Topher got to experience his first blood draw, his first IV, and his first nasal cannula. He's not loving it, but he is breathing without his chest caving in, so that's progress.

This is not how I thought this week would go.

The Health Report

Peter is feeling much better from the chicken pox. He still has spots, but they're not contagious anymore. Three of his sick days overlapped with snow days so he didn't even miss that much school.

He's recovered just in time to get croup with three of his siblings. So far Cooper isn't coughing, but the other four are. No, I don't know what's up with our immune systems this year. And did I mention that Phoebe had pink eye and Topher has it now?

And even when they're sick they still wake up before 6:30 in the morning...